Abigail's Story - Congenital Diaphragmatic Hernia (CDH)

I found out I was pregnant with our second child mid-March, 2011. We went to our first doctor's appointment and everything looked great. We were so excited to be expecting again! After about a month, I went back for a second regular appointment. The doctor came in and tried to find the baby's heartbeat. She couldn't (very scary moment). I was around 10 weeks so they wanted me to have an ultrasound to see if they could find it there. They ended up finding it and we were relieved. We went back again the next month and the same thing happened. This went on each time! No kidding! We didn't think anything of it, since they told us it could possibly be just a tilted uterus. So, everything seemed great. I felt good and the doctors weren't concerned. At my 28-week scan, a new ultrasound tech did my ultra sound. She started scanning and said, "She won't empty her bladder. Why is this baby not emptying her bladder?" She explained she couldn't see her kidneys. She then asked for the other doctor. Unfortunately he had already left, so we had to come back the next week. When we came back, the other doctor did the ultrasound and explained he thought it looked like an ovarian cyst on her ovaries.

Weird! He then scheduled an appointment with a high risk specialist and wanted us in the same day! That's when I knew something wasn't right. We ended having to wait two weeks before we could get in to the high risk specialist. It was a dreadful wait! Finally the day came and we went. I will never forget that day. They called us back to the room, and the ultrasound tech started scanning. It felt like she scanned for almost 2 hours. I remember turning to my husband and saying, "I hope nothing's wrong." Then, the doctor came in and greeted us. She was very sweet! She told us she was going to look at the picture then tell us what she was seeing. She started scanning and said, "Suzannah, she has a hernia." I was thinking...just a hernia. But then the doctor continued, saying her intestines were in her chest and her heart was pushed all the way to the right.

I was crushed! I started to tremble. We got up and she started telling us about our options. She explained she probably had around a 30 percent chance at life. She then told us about Dr. Kays! She recommend we get there as soon as possible. And boy am I glad we did! That night, we went home and googled Dr. Kays and were amazed at the survival rate! I knew that's where she was going. We finally got to meet him. He was so sweet to us and explained everything there is to know about CDH. We then took a tour of the NICU. After that, he hugged us and told us he would do everything possible to save our baby girl! We felt so relieved after we left there. On November 1st, we moved our family to Gainesville, Florida.

We rented an apartment a mile from the hospital. On November 21st 2011, Abigail Faith Howell made her entrance into this world. Immediately, she came out crying a little. It sounded more like she had been punched in the stomach. Dr. Kays then took her and intubated her. He brought her by me for a quick kiss then off to the NICU. I finally got to see her later that day. It was so hard to see her hooked up to so many machines and wires. She did well for the first 24 hours then started to crash. Dr. Kays came in and turned her and her numbers improved. Dr Kays explained that if this kept happening, she could need ECMO.

The next day was surgery day. I will never forget a certain moment that day, as they were prepping her in the NICU. I was an emotional wreck. Dr Kays grabbed me and gave me the biggest hug and told me he would do his best to take care of her. Her surgery was about 3 hours long. Finally, Dr. Kays came out to get us and tell us how surgery went. He explained he had good news and he had bad news. He explained the good news was she had a little more lung on the right side than originally thought. He also explained there was more in her chest then we thought: intestines, spleen and kidneys. He also told us she needed a Gore-tex patch, since she only had 40 percent of her diaphram. The next few days, she continued to do great! She didn't need ECMO. After 10 days on the ventilator, Dr. Kays took her off. She had some feeding issues but not too bad. After 23 days in the NICU we were able to bring our miracle home! We are so grateful for Dr. Kays! Words can't express how thankful we are to him for saving our girl. Abigail is now an energetic, happy, full of life 4-year-old! She has had some hospital stays but that doesn't slow our fighter down! Dr. Kays will always be our hero!